Aubagio : Has anyone experienced hair loss... - My MSAA Community

My MSAA Community
5,402 members11,571 posts

Aubagio

Neworleanslady
Neworleanslady

Has anyone experienced hair loss with aubagio? My doc wants to switch my meds from Copaxone. She suggested ocrevus and i said no bc I’m scared of pml. So she prescribed aubagio and now that I’m reading up on it it says hair loss is a side effect!

50 Replies
oldestnewest

I have been on Aubiago for two years now with no side effects or hair loss. Last two mri’s were stable and no new lesions 👍. Ken 🐾🐾

Neworleanslady
Neworleanslady
in reply to Kenu

Thank you!!! I’m having trouble thinking about anything else.

Copaxone was years ago and I did not like it. I did Lemtrada and loved it. No problems no side effects and after 2 rounds of treatment I AM DONE! Doing great. If I was to go on an oral med it would be Aubiago I suggest for you to go to the educational programs they offer and talk to the people there. go to msbucket put in your zip code find one or two or more you want to go to and go. We use this as a support group and go to programs on all the drugs.Hope this helps.

Will do Thank you

I was worried about hair loss too before beginning Aubagio. It still sounded like a better option to me than the ones that increase risk of cancer (already runs in my family). I'm JCV positive, so nothing that has PML risk for me.

On top of everything else, I didn't want to have to explain why my hair was falling out to others.

It really was a non-issue. Some extra shedding for a month or so, but only noticeable to me. It did NOT create bald spots or patches, shedding was distributed throughout scalp.

Overall, Aubagio was a great decision. I've been taking it for 1.5 yrs.

Neworleanslady
Neworleanslady
in reply to CV97

I am so thankful for your reply and grateful to hear of your experience with aubagio. I’m back to being excited about starting it. I was thinking them saying hair loss meant chemotherapy full head hair loss. I feel the same as you in that i would not want to have to explain my losing my hair to others

CV97
CV97
in reply to Neworleanslady

If you google "Aubagio hair loss pdf" you can find a couple pdfs that explain the process. One is for drs, so it explains it in more technical terms. The other is for patients and is a little easier to understand. Those really helped me understand how aubagio causes hair loss.

Neworleanslady
Neworleanslady
in reply to CV97

Ok! Thank you! :)

Are you getting Ocrevus and Tysabri mixed up? Tysabri (natalizumab) is the drug which has a significant potential for PML problems.

No, ocrevus says theres a slight risk of pml although I don’t think theres been any incidence of it yet. But it’s only been out there 2 1/2 years. And i am jcv positive.

I did Aubagio 3 years ago, for 10 months. I stopped because it gave me a lot of side effects. No help. Fter that I took Gylenia, no help, stopped after almost a year. I am not taking anything. I have secondary progressive. A lot of symptoms: nerve pains, IBS rectal spasms etc. Good luck to you.,

What kind of symptoms?

Good Morning and Happy New Year everyone. I don’t have much to add to what was already said. I’ve been on Aubagio for almost 7 years. As said above hair loss was basically a non issue; probably happened more than normal (aside from regular daily hair lose) so nothing noticeable. All stable for me. I wish you the best. ✌️

That’s good to hear. Thank you!

I have been on Aubagio for 2 years and for the first 6 months I did experience slight thinning of hair on my head but it was not permanent and did not continue for more than a few months. Other than this, it has worked very well for me. No new lesions and very little if any relapses. As long as I continue to eat healthy and get exercise daily I hope that this will continue. I hope it works well for you if you decide to go with it.

Thanks a million! I’m gonna go for it and give it a try (not that i have much choice)

I've been on it for several years and have not had hair loss. But that's just me. I think some people here have had some.

Super. Thank you a lot. I hope that’s how it works for me

Why does your doctor want you to switch? Is Copaxone not working or are you having side effects that are causing problems? If either of those are the reason, you might look to another DMT that might work better for you. But switching just to switch or just because the doctor wants to try something else doesn't make much sense. I have been on Copaxone since 2003 and it is still working great for me. And as long is it is working, both my doctors and I see no reason to switch to anything else, not even the generic. However, I know there are other cases in which Copaxone no longer worked for them and of one case where a side effect (hives) got too much for her, so there was reason to switch to another DMT.

Neworleanslady
Neworleanslady
in reply to LJMC

I got switched to generic Copaxone. Bc of insurance. My walking is more spastic and slower. I loved Copaxone at first but i began noticing increased walking probs before switch to generic. I hope this will be a good switch. My doc is great. She wouldn’t switch me for no reason. I don’t have new lesions. She said the MRI doesn’t tell the whole story when small changes are happening. I’ll tell you what she called it in another post bc i have to look it up here on my phone and i fear if i get off this page it’ll erase what I’ve already written

Neworleanslady
Neworleanslady
in reply to LJMC

Clinical radiologic paradox

kandykone1
kandykone1
in reply to LJMC

It’s been 2 years on copaxone for me and my skin dents aren’t getting any better. I fear I can’t stay on much longer due to muscle loss. And it haven’t been very long ☹️

LJMC
LJMC
in reply to kandykone1

The "skin dents" most likely won't get any better. My doctors explained to me that every time we inject, we kill some cells, so injecting in the same place all or most of the time makes those "skin dents." So my doctors & Shared Solutions (the Copaxone aid service) showed me how to rotate injection sites on my body. I've been taking daily injections of Copaxone since 2003 and I don't have any noticeable "skin dents."

Hidden
Hidden
in reply to LJMC

Wow. I’m definitely doing something wrong if it’s been two years and you can see mine already. I rotate the 7 spots but each rotation I must be going back to the same spot. I’ll prob call SS for assistance.

I pray that you do get a DMT that works and fits for you. I know that I've been overly lucky to have my DMT (Copaxone) keep working well for me for all these years. But even in my small M.S. peer group, there are a few people who have had to try 3 or 4 DMT's before finding one that works and fits for them. (Oh, I don't know if you are in an M.S. peer group or club, but if you aren't, you should. There are pains, feeling, & stresses that we who have M.S. have that even our closest family & friends just don't understand. In an M.S. peer group, you can laugh and cry with others who do understand. Through the M.S. Society, M.S.A.A., and/or M.S. Focus, you might find a local M.S. peer groug that fits you and your lifestyle).

Neworleanslady
Neworleanslady
in reply to LJMC

Thank you I will look into that.

I was on Aubiago for over Two years I lost almost all of my hair in the first 6 months but it came back full and curly. I have always had basically straight hair. I like it but it's different. I'm on ocrevus. I tested positive for the up virus but my doctor keeps close watch. I love ocrevus. I've been on it for three years and no relapses. I feel normal. I regained strength in my right leg. I have nerve damage and drop foot. Hardly notice anymore. You should try it. Once every 6 months is great. I've had no side affects.

Lost all

Your hair??

Really. Very interesting and promising

Hi Neworleanslady,

I'm Pam and am currently on Aubagio after failing Tecfidera, Copaxone and Plegridy. I have experienced hair loss with the Aubagio 7 mg. My neuro said she'd never had a patient experience it before. I also had to start BP medication which is also listed as a side effect. Regarding the hair loss, i began shedding in 3 weeks and it just became worse. My stylist kept coloring my hair lighter to prevent the obvious difference btwn scalp and hair. I did finally get a wig, which is 'nice' because I can have perfect hair in 30 seconds! I don't go out in public w/o a scarf, hat or wig.

I don't want to scare you and this is only my experience. I continue on the Aubagio because it works. My hair is slowly growing back. I'm glad to read that so many haven't had problems. It is a good DMT.

Pam

Uh oh that makes me nervous.

I do like to hear that it works for MS

I think I'm more on the unusual side of things, if something weird is going to happen, it will happen to me. Just a fact that I've learned will take place. Remember there are more people who didn't experience severe loss. You'll never know if you don't try it...

Thank you. I am going to try it. Im so glad it is working for you. You must be a strong person.

How long have you been taking aubagio? I took Tecfidera and Copaxone too. Just not plegridy.

I've been on Aubagio for 18 months. Tecfidera dropped my abs lymphs from 3.2 to 0.4. Copaxone gave me such a severe local reaction after each injection and Plegridy was SO painful. After 6 mo. I told my neuro I couldn't do it any more, he says, "I'm surprised you lasted this long. Most people give up earlier." What??! I hadn't been told that was an option. 😬

Aubagio ruined my hair. I lost so much hair it broke my vacuum! And my hair was so stringy and gross i cudnt handle it. Had to stop the med

Oh no!!! What are you on instead?

Nothing. Once i stopped aubagio i had surgery and ended up in the hospital w pneumonia. So gar i have remained stable so i am taking my chances and trying to follow Wahls protocol. My neuro wud rather i be on ocrevus but i am ok this way

And how long were you on it?

4 or 5 months. Hair loss is supposed to to stop after 6 but my hair dresser said u can always tell wen someone is on meds by condition of their hair. I am very vain about my hair and cudnt bare to see it like that

So did you hear I’ll come back normally? since you’ve stopped i mean

Your hair

It took 2 years for my hair to come back to its natural state

Dang. Thanks for sharing

Not saying that wud happen to u. No 2 people react the same to a med. but for me personally it was bad. So bad.

Why did you choose to not do ocrevus or anything else? Was/ is it a fear of pml? Don’t you have worsening MS symptoms? (I understand if you may not want to answer this)

I dont mind. I wud have to travel too far for infusions, the expense, u name it. I just started to think the meds were worse than the disease. So far i am stable. But my neuro says its like i am walking a tight rope w no net. And i am ok w that

Thank you. I’m not sure what I would do in your situation! It would take a lot of thinking and praying

My best wishes and prayers for success with your decision in this regard!!

Thank u 😘🤗

You may also like...